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Everything Slumps

Tuesday, October 13th, 2009

My birthday approaching; lilt missing; everything slumps.

No card will come from my mother this year.

I spent yesterday visiting with the dying, shadowing a hospice music therapist in conjunction with a spectacularly ill-timed consulting project. What was I thinking?

Today I feel traumatized, my thoughts turbulent and sad, a grey vortex of bereavement and regret commingled with aching, yawning, tangled pain. Back in it: the loss of her, and how hard her final years were, and what it was for her to be that broken wren with ravaged lungs who kept pushing that walker with her face turned so brightly to the world, and the cruel facts of all that she lost and suffered in her life. And the many ways I failed her.

The loss of her, but more, too: With my mother gone, all of what used to seem so large and expansive and certain—the historical framework of her life, and mine as her daughter—now seems tenuous. I feel cut adrift from the history that was hers, the stories of her childhood, the sense of a living connection to her large and vibrant family. The father whose shtetl-to-tenement Jewish immigrant story made all the more remarkable his rise to urbane mid-century orchestra leader. The mother whose German pioneer parents ran a large farm while raising eight children to be professional musicians. All this now seems increasingly vague, disconcertingly abstract.

I feel a slipping away of the connecting threads, of the certainty of enduring ties, of everyday engagement with what my mother experienced and knew. The ordinary verities of her life: What does any of it matter now? I feel compelled to declaim things she knew—the experiences and memories that were organic to my mother, that came to seem inseparable from her: Here is the street of snug 1920s houses where spirited Aunt Anna lived, where eccentric Uncle Ed once tipped over in a wing chair while listening to John Phillip Sousa music on the Victrola. Here is the garden center where Elsie, my grandmother, briefly worked after my grandfather’s death, pruning azaleas and potting geraniums in a green smock over her plaid Pendleton jacket. Here is the slipshod bungalow where Aunt Mame ended up after losing her home to unscrupulous bankers in 1935, here is a trendy boutique where once there was a corner drugstore, soda fountain and all, owned by the parents of my mother’s teenage pal Rose.

The entwining of my own experiences with my mother’s from the time my tiny heart beat just beneath her large one. All that I came to know through her stories, to see through her eyes. The wistful loneliness I feel when the waiter brings bread in a cafe, my mother’s voice in my head singing “le beurre!” as she never failed to do when passing the butter dish; then I’m recalling her much-told (if improbable) tale of how she failed high school French because, having also enrolled in Spanish, she’d mistakenly completed her French exam in, as she put it, “not parlez-vous-Francais, but Ess-span-yol!”

The many things I recall and know—and am—because I am my mother’s daughter. The weave of history, of memory; a shared tapestry, and now a bewildering inheritance. If I am inseparable from her, now what? No daughter of my own; what, then, of my mother’s legacy; what, then, of my own?

Most of all, this: With my mother gone, will the skein unravel? Will the threads hold?

********

Every year on my birthday, my mother would make a big show of retelling—in a marveling tone, with gestural flourishes—the story of our first shared experience in the world. How it was a gloriously beautiful sunny October day, warm enough for her to don oversized pedal-pushers with her maternity blouse. How she knew in mid-afternoon, while enjoying coffeecake with my grandmother, that I was about to make my debut, and how my grandmother drove her to St. Barnabas hospital in her Plymouth, all the way exhorting my mother to “hold on, sis, I’m no midwife!” How I was an easy birth, out of her womb in a flash and nestled contentedly in her arms by 4:30, such a happy baby; how she cooed “my darling, darling daughter” in a ray of gold-glinted autumn sun beaming in the hospital window.

She’s not here to retell the story this year, or to see me shake my head in fake bemusement at her silly sentimental mugging. She would have been dismayed, I know, to see the snow that fell from October’s skies this year. Snow! The wet flakes turned to ice on the still-blooming lillies on the front-yard slope, closed the resplendent blossoms on the hibiscus, took the still-ripening heirloom tomatoes on the vine.

It’s because of my mother. I can’t help but think it. Thirty degrees in mid-October, the once-plucky geraniums now hanging their heads alongside a snow shovel better suited to December. The ash trees curling their leaves in shock or sorrow, color draining from the late-summer coneflowers and the weigela that only last week rebloomed on the front-yard hill.

Frost on the heirlooms; thyme frozen; the remaining harvest gone. I suffer the unseasonable chill, bemoan its insults and losses, but in truth I’m not surprised by it. My own roots heaving. This October altogether so much colder.

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Big Mess With Mom: The Story

Tuesday, March 24th, 2009

The day my mother was packed off from hospital to care center found me repeating The Story again and again. This had come to be the drill, whenever new health care providers or social workers appeared in the picture.

My mother’s health care history was not only a groaning database of doctor consults and hospitalizations, lung function tests and labwork, EKGs and CT scans, dexas and mini-mentals, pulmonary therapies tried and medications taking up two square feet on a countertop. It was also a train wreck, an obstacle course, a Rubik’s cube. It was a ruinous game of chutes and ladders tied to deep furrows of personality and habit and most of all to the tangled skein of her marriage. It was no exaggeration to say that her well-being had become hostage to her husband’s ineptitude, selfishness, and slipping mental gears–and his fury at both his burdensome wife and her meddlesome daughter.

Over and over, I tried to make sure people entrusted with any part of my mother’s care grasped the intricate and messy complexities of her life: her limitations, his hinderings; her profound vulnerability, his minefields and roadblocks. It exhausted me to keep doing it. But without either a power of attorney or guardianship for my mother, I was consistently at a disadvantage. My attempts to intervene on my mother’s behalf often came a cropper because I couldn’t whip out a duly executed power of attorney document. The ace in the hole I did have–my mother’s health care directive, naming me and my sister as prevailing decision makers in the event of my mother’s impairment–seemed to be given short shrift.

That my mother’s memory and judgment were impaired there was little doubt; every doctor who had met my mother said they would testify to that effect if I went for guardianship. Yet my mother, unaware of her misfiring synapses, continued to be treated as though she was capable of making her own decisions, with my impaired father—who worked hard, and often successfully, to fool people into seeing him as wholly functional—riding shotgun.

I wanted–needed–the doctors to get it; if I was to gain any traction in my efforts to ensure my mother’s well-being, it meant bucking not only my mother’s confusion but my father’s overt resistance. And so I kept telling The Story, the action-packed tale I referred to privately as Big Mess With Mom (the title I’d scrawled on a file cabinet bulging with mom-related folders). The Story: Of her losing battle with emphysema (with a dementia subplot) and my flailing (and often failing) attempts to slay all the dragons of hardship and misery (mostly my father’s doing) that were in the path of this increasingly frail and vulnerable woman.

With the hospital social workers, I took a deep breath. Here goes, I thought. Another attempt to shorten into a pithy and useful tale the excruciatingly steep and rocky journey of the past three years.

The Cliff Notes version would look something like this:

My father’s bad behavior, my mother’s dodgy mind, pointless pulmonary rehab, the downward spiral through missed medications and rotted food and stairway falls, the pitched battles with my father over the air conditioning he wouldn’t turn on and the accessible shower gizmo he kept taking off.

 

The Husband Run Amok: The Leaving His Wife in a Hot Car debacles, the Mismanaging The Oxygen catastrophes, the Harassing of the Home Health Aides saga, the Trying to Keep the Daughters Away chapters, the Writing Bizarre Notes to the Daughter kerfuffles, the Cancelling His Wife’s Doctor’s Appointment episodes.

 
The doctors who didn’t get it or didn’t want to get involved, the lawyers who pressed us to get guardianship but warned of balky judges, the county social workers that needed things to get worse, the urine-soaked clothing, the eventual horrifying crisis, finally the intervention from the county, the transition into rehab, the triumph of getting my mother into assisted living … and the despair that my father went with her there.

 
And up to the present: Her decline, his hostility, her cheerful quasi-lucidity, his brooding mental tangles, the reality that health care decisions would now have to happen without them, the good news that mom has a living will … and that I am prepared to do everything I possibly can to help my mother in this hardest hour of her life.

That day, circumstances required me to tell The Story (or chunks of it) to a social worker, chaplain, and hospice planning team at the hospital; and to an admissions director, social worker, nurse manager, and night nurse at the care center. My parents’ impairments had become more profound, and more obvious; still, many of those on the scene in the last few months of my mother’s life continued to put them in the driver’s seat. As evidence, I need only note that when my critically ill mother was first admitted to the hospital on the day after Christmas, the staff had initially heeded my father’s instructions that I not be notified at all.

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